What a day. I woke up at 12 noon, but didn’t get out of bed until 3 pm. Absolutely everything hurt, including my chest (even breathing was painful). My neck felt like it was being pulled apart; I attribute this symptom to all of the stress that I had to have been experiencing during this episode. And for the first time ever, I had a really strange bout of facial pain…sort of like the burning sensation associated with a really bad sunburn…but even worse.
As late afternoon neared, I figured it was time to get out of bed and bathe, groom, and dress myself. I made it into the bathtub full of hot water, so proud that I had done so alone. But then things got difficult. I tried to muster the strength to get back out, but couldn’t seem to do so. Sure, I could have called out for help, but I told myself to keep on trying. Mind over matter. Finally, the hot water turned warm…then cold…and I figured it was time to finally get moving again. (It’s amazing the strength that one can muster when sitting in a tub of cold water.) One leg. Another leg. One arm. Another arm. And before I knew it, I was standing up. Mission accomplished.
But wait, I still had to towel dry myself, brush my teeth, shave, fix my hair, and get dressed.
I made it to through the drying part, and then I just couldn’t move any more…no matter how hard I willed myself to do so. Instead of calling out for help, I sat down and cried. My tears weren’t so much a result of feelings of frustration or failure. They were more linked to a new level of acceptance, a new level of realization: the understanding that my mobility just outright disappears for undetermined amounts of time. Getting more and more accustomed to that strange sensation that comes when I know my mind is sending out signals…but nothing is happening.
Just at that moment, my husband stepped into the bathroom to check up on me. After helping me finish my routine and once I was dressed, he suggested that I once again lay down and rest in bed…but all I wanted to do was sit upright. So I did. I sat at my desk…and I thought.
I thought about how confusing all of this is, even though deep down inside I have a certain feeling of internal balance. It’s confusing, because normally during episodes like this one I’d feel really scared. And depressed. But I don’t really feel this way, and I don’t know why. So I began to wonder, am I really just in denial?
Am I not allowing myself to really process everything that is going on, to feel the pain even though most of my body is actually quite numb as the result of its constant presence? Am I not allowing myself to see the true enormity of my increasingly frequent episodes of loss of movement? Am I being overly optimistic, unrealistic?
I don’t think this is really the case, either. In fact, I feel like my eyes are actually wide open. But it’s not just my eyes that are open. My heart is open. I’m feeling what’s going on. My mind is open. I’m thinking about what’s going on.
And then I began to realize, that this discomfort, just like my tears a little earlier on, actually came from new levels of acceptance. They are coming from this openness, from this first-hand awareness. From reaching out and connecting with my constant pain, in an attempt to try to get to know it just a little bit better. From knowing and accepting my disabilities and loss of movement, strength, and coordination when they are present, instead of fighting against them. From being able to do so, without feeling scared and anxious. From feeling like my mind is in peace, even though my body is in hell. (From feeling guilty for feeling this way, like I’m somehow leaving my body behind and moving forward with my mind.)
But I know that, at least for now, this is the safest place for me to be. Within all of this discomfort, I’ve found a little pocket where I can indeed be comfortable. For this, I am grateful.
Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!